RD can so often be invisible to our nearest and dearest

[shasmac]

It's just so nice to come on here and tell it like it really is...not having to down play or pretend about the level of pain and disability we are experiencing because we know what each of us is really saying. Because this is often a hidden disease non-afflicted people cannot possibly understand the level of pain that we can experience. Just as I didn't prior to being diagnosed I am now ashamed to say, even though I worked with older people having both OA and RD. So we need to cut our friends and family some slack I think...exactly how much did we really understand about RD prior to our own diagnosis.

[Hidden]

I agree. My friends and family are really good and my sisters have put NRAS RD Awareness stuff on their FaceBook pages bless them. I'm very lucky with my friends and family. And when I feel a bit grumpy about the lack of understanding in the wider public about hidden illnesses - I think back to a time when I didn't know much myself as you do and that usually sorts me out. I think if we expect too much of people we will just get more disappointed and let's face it there's enough to disappoint with having RD without any additional stress!

[nomoreheels]

You're right shasmac. I'm comparatively ok compared to some members so don't generally need to vent here, rather enjoy the fact I can communicate with people who have the some troubles as me. Going through a blip at the moment with "med messing" over the last few months so been a bit more crotchety than I like through flaring without my meds I do well on. That'll hopefully change next month when I see my Rheumy but know that's my husband in particular is getting it in the neck more than usual! He has his own issues to deal with, again because of med messing as he was also fine on his meds & they were changed because of cost. He also now has another issue to deal with in central sensitization which nothing he's given is working or he can't tolerate. Anyway, we muddle through but at times do wonder if he really knows how I feel, & probably me him, truth be told.

Like you I also knew nothing about it till RD hit me I'm also am ashamed to say. But which of us who had no connection with it would be expected to which is why I also agree with Twitchy when I get edgy at people who don't get RD & how it affects us. My nan had gnarled fingers & funny buniony feet & was always stretching her lace up shoes to make them more comfortable but I was young & she was an old lady & I just thought that's how old ladies were!

I also find coming on here reminds me that my RD is reasonably well controlled when I read of some others' problems & also those with multiple related & non related issues they have to deal with. So when I rant on about PIP & the healthcare system & some of those providing the care (or not!) it really pales into insignificance & gives me the jolt I need back into reality & remind myself I'm not doing too bad. I do wish sometimes though when I get "how does it feel" regularly from one particular family member & get back "that's just how I feel" & I suggest, for the umpteenth time, that she goes to the doctors for a check up & she comes back with "oh no, I'm not bad enough to go to the doctor" she could be me for a day, maybe even, being peevish, when having a flare (or is that taking it too far?!). I know damn well she has aches & pains & doesn't always have a full nights sleep but know the difference between that & having RD ggggrrrrrr! Ok she's going through the menopause, so am I, and RD and OA and CS. One of these days I'll throw the book at her & show her my medical file, but not convinced even that would convince her it's not just my age so what's the point?!

Mmmm feel better now, thanks for posting this shasmac. Not sure that was your intention but it worked for me!

[allanah in reply to nomoreheels]

I saw the pain , disability and early death caused in my family by RD and even with this I didn't really GET it! My Dad bless him asked to to rub his hands, I did , but to my now shame it would be short and sweet, I was a teenager with things to do! I'm sure he forgave me though.

But I do get grumpy at the, oh I get this a little in my finger, but I used to be initially on a crusade to make them understand what RD really is! Now I get lazy or browbeaten and just say poor you . But RA awareness week always perks me back into action a bit and I always hope people will see the adverts and understand.

[Hidden]

Yes same here about losing the impetus to bang on. Last night I was sitting at a big choir gathering where we had to keep sitting and standing and the woman next to me went on strike and just sat down throughout looking really fed up. She told me in furious tone that her ankle was really painful - it keeps giving out and wakes her in the night. I actually felt quite sorry for her as I've had pain like this before many times.

Only later did it occur to me that she knows I have RD. I was also sporting (or trying to hide under a scarf!) a week long holter monitor for my heart palpatations, a rash that a dermatologist diagnosed as scurvy (?!! And I'm a fruit bat!) and had a really bad case of post MTX stomach cramps last night that had me slithering past everyone four times to get to the toilet!

What I'm trying to say is that RD is for life and people just don't understand either it or the cormobidities that can come with it, never mind drug side effects and fatigue. But even I don't really understand these myself so how can anyone who just has a sore ankle comprehend what its like to live with a multi system autoimmune disease everyday?! Twitchy

[Jeanabelle60]

Try this. butyoudontlooksick.com

Jean xx

[Hidden in reply to Jeanabelle60]

Hello! Thanks for providing that link. I checked it out and loved it.

[Hidden]

Hello! I so agree with you. Where else can you get a free therapy session 24/7. This forum is great for just that. I love the honesty. Anyway you can't sugarcoat RD. We just have to tell it like it is and nobody knows what we are going through but another like person who is suffering as well.

Before I was diagnosed I never knew anyone that had this. I think if I did I still would have downplayed it thinking there was some major over the top exaggeration going on and that nobody could ever be in that much pain.

It's been just over two weeks fort diagnoses however the suffering prior to that was unbearable. I hate this disease. It really sucks. I have to learn to live with it and do my best to educate myself in anyway I can. I've learned so much from this site. I like this site because after reading some of the content you know that people on here really care about each other and try to be as helpful as they can.

I do feel your pain! Thanks for sharing and enjoy your day

[Footdoc]

Thank you one and all. Sharing amongst fellow sufferers is without doubt the best thing ever. Prior to being struck down with PsA I was a podiatrist with NHS experience and a thriving private practice. With lots of experience of patients with RD and diabetes I thought I had a good understanding of how my patients felt. There were many times you could sense the sheer frustration and despair to just get through the daily grind of living. My heart would truly go out to each and every one of them.

Then it was my turn! That was one hell of a wake up call. That was when I realised that only a fellow sufferer could understand what we go through. I was able to carry on working for another six months, and the relationship with my patients who had RD, just changed so much. The empathy became real, the understanding made much more sense with people who knew exactly what I was experiencing. In the early days my patients supported me, and I am so grateful for the help and understanding, which got me through the early days of my journey. The tips and tricks I have learnt have been invaluable. Six years down the line I have realised that the majority of people will never understand our plight. But all of us must on carry supporting those unfortunate souls who join our ranks. All of us together can make a difference. You have helped me so much since I discovered this site.

When I get really low I try to remind myself of an acquaintance who just 35 years ago was struck down with RD and in less than a year she ended up spending her days in a wheelchair, she could not even feed herself. If we are struck with RD, even in these financially tight times, there is so much more available help and wonderful but horrendously expensive drugs available to us. The chances of ending up in a wheelchair with horribly deformed hands and feet are so much reduced. If we can get non sufferers to understand really great, but don't be too hard on them. I know it can be frustrating and maddening, but I thought I knew it all. HOW WRONG WAS I !!!!!!!!!!! This site with all the input is probably the best therapy. Let's all keep going as we have been. That's my sermon for today folks. Be good!

Footdoc